My many faces

Discussion in 'Life After Caregiving' started by Missy's banks, Jul 23, 2017.

  1. Missy's banks

    Missy's banks Member

    My momma was diagnosed with colorectal cancer in October of 2015. We got in touch with cancer treatment center of America the same day. They made arrangements to see her within a week. My aunt went with her for the first trip because she had previous experience with this kind of thing with her brother. They were there about ten days. She found out she was stage 4 cancer had matastisized to her lungs. They came up with a game plan so began the journey. She had to fly to Chicago every two weeks for chemo. Me and my aunt took turns going with her. They paid for my momma's plain ticket but she had to buy the caregiver ticket herself. When she returned after her first treatment she was so sick it was terrible. I'd never seen my momma that sick before. The next time was my turn to go with her so I had her start taking her nausea meds a couple days before her treatment,made sure she ate and took her pain medication when the pain would first begin. She didn't even throw up one time and wasn't suffering from a lot of pain. She was tired and didn't have an appetite so on my next turn to go I told her care management team and they gave her vitamins and maranol to help with these issues. Her pain began to increase by the time it was my turn again so I discussed it with her pain management team and they started her on another pain medication and raised the dosage of her other one and it began to work. I got her one of those weekly pill boxes and kept it up on all her medication. I would ask her periodically if she was in pain and if so what level and give her medicine according to her answer. I was keeping her out of pain without keeping her doped up. Making sure she was eating. I became her main caregiver. She was also my neighbor and I didn't have children so I guess everyone thought it just made sense. I am however married to the same man for almost 20 years at that time. He had a full time job and we had 4 dogs that had to be taken care of so on my trips he was on his own. My momma ended up wanting one of the dogs we had so I gave her one of the ones I had rescued from my brother. They were an awesome match but on my turns my husband took care of the dog. After a few months the DR. decided that my momma needed radiation so she had to be in Chicago for three weeks and I decided to be the one that stayed with her during that time due to the fact she seemed to do better with me than my aunt. I later found out my aunt wasn't making sure she took her medication on time and took it everyday and also eating enough. I also wanted to spend every single moment I could and make as many memories as possible with my momma. I'm so thankful I did. We stayed at the same hotel every time we were in Chicago so we made a lot of connections with a lot of people. We became very close friends with our shuttle bus driver and eventually both of them. These people became like another family to us. After a while we would find out one of our Chicago family had lost their battle with cancer and we would grieve for their families and also be saddened ourselves. When my momma started losing her hair me her my aunt and my sister went to visit my moms niece which was also her best friend and a beautician and she had her shave her head which was way harder on my momma than she expected but she got through it and eventually had me shave it completely bald. I told her she had the perfect shaped head to pull off the look. I was amazed at how perfect her head was shaped. Eventually she got a wig given by the hospital and it was beautiful on her. She got a red one cause she said she always wanted to be a redhead. Me and my sister also got her a lot of really cute and stylish hats and other head wear. Some for cold weather and some for warm weather. It gets so freaking cold in Chicago we had no idea how different the cold was compared to the weather at home. I mean crazy cold. When they did another scan my aunt didn't take notes or tell us anything else that the doctors were saying so I learned to read her medical tests and blood work for myself. At first the tumor was shrinking and so was the spots on her lungs. When the time came a few months later for another scan the chemo had stopped working and they found spots on her liver. They changed the chemo and continued treatment. She had to miss some due to blood clots and inability to travel due to weather. Still I was taking turns with my aunt on the trips. There were a few ER trips due to painful back spasms. The first time I took her for that they gave her a cocktail of meds that worked and I could keep her pain under control and her out of the ER for long periods of time between the unbearable back spasms. When I did have to take her back I would tell them what meds they had given her in the past that worked the best every time. Most of the time they would not listen until they had given her at least three pain shots with no results and then they would give her the other two meds that completed the cocktail. After a while if I had to take her I'd tell them about the cocktail and to look at her records and they would see it worked every time so they finally started listening to me. After the chemo changed the spasms stopped. Eventually she would have to be admitted for pain every great once in a while but mostly I could keep her out of pain myself. At some point it got hard for her to urinate so they had her doing self cathing which she couldn't do for herself so I had to learn to do that and she also lost control of her bowles. In this time I ended up getting sick and put in the hospital two weeks the first time and ten days the second time all within two months. I would start throwing up and get dehydrated and have to go to the hospital and end up being admitting. During that time I got behind on reading my moms paper work from ER visits and from blood work and scans. After a while I read the paper work on her and realized two of the times she was admitted through the ER she really needed a blood transfusion and no one said a word about it. On our last trip to Chicago they seen her blood work and gave her a transfusion because she was so weak and tired because she was missing half of her blood. I think by then it was too late. We were told in Chicago the chemo was not working anymore and recommended she discontinued them. The tumor had grown and the lung spots had grown and her liver was covered. One morning she called me because her side was hurting so bad she needed to go to the hospital. I drove her there myself. She was talking to me she was just in pain. That ER DR. ran some tests and decided he wanted to do another scan. For some reason I really trusted him so I said do it. He said he didn't like what he seen but it might be nothing he wanted to wait for another DR to look at it and get his opinion. A while later after they had given her the cocktail and she was no longer in pain. The other DR informed me the cancer had eaten through the wall of her colon and caused an abscess that they were unable to get to without surgery and antibiotics would not work unless they got rid of the abscess. I told him she would never survive a surgery she was so small and weak. He agreed. I told him she would not want to die on an operating table. I was alone at the hospital with her. Keep in mind this is my momma my best friend she had become my world. My everything for almost two years now. I had stopped my own life and she became my life. She was my best friend before she got sick. You didn't see one of us without the other. Together every single day if possible. If not together everyday then we had to talk everyday. They decided to admit her for the pain. Out of nowhere one of my little cousins showed up at the hospital so I was no longer alone. God had sent me an angel. A life line. I called my family to tell them what was going on. She woke up later that day and I told her what the DR said she understood. She said she wanted a milk shake so my sister and I went to get her one. Before we left We kissed her and hugged her and told her we loved her. She told me I love you too baby girl. That was the last time I heard my momma's voice. I called in hospice later that night and made arrangements for her to go home. They were having a problem finding a strong enough liquid pain medication for her because she couldn't take morphine. I finally told them we wanted to take her home so I would just crush up her pills and use the liquid adavant and put it in a child syringe and give it to her like that and they also had her using fyntinal patches. Hospice is not what you see on tv. All they did was supply the equipment and medication. I was still the one that administered the medication. All they did was traumatized me by telling me how her breathing would get harder and I would see it start in her stomach and eventually she would pretty much be struggling for air and not be able to get it and she would die. I told them I'd kill her myself before I let that happen. And they had me call them when she was gone and they called the coroner. In my opinion hospice is not what they portray themselves to be. That is my story as a caregiver for my momma.
     
  2. Dear Missy,
    You certainly have had a tough time taking care of your Momma. I am sure that she appreciated how careful you were to see that she got the very best care each time she needed it. I have been a caregiver for both my sister and my Mom, and I had to learn to speak out for them and supply information, plus trying to ask the right questions of all the medical people, just as you did. Caregiving is a huge job. I was lucky enough to find a caregiver's support group which has been a great help and a great source of information and ideas about taking care of someone else and also taking care of yourself.

    My sister fought Cancer for nine years. She had breast cancer that metastasized to her liver, bones and eventually her brain. She did not live in the same state as I do, so I made many trips back and forth to care for her after various surgeries and treatments. It was so hard to see her getting worse and worse each time I saw her. We talked on the phone just about every day, and had been very close since we were children. She died last November, and I miss her every single day.

    I am sorry to hear that your experience with hospice care such a poor one. My sister had both home and residential hospice. I was responsible for her medications just as you were. But if I had any doubts or questions, all that I had to do was pick up the phone and I could speak with her hospice care nurse. If I needed anything or had concerns, a nurse would come to her house to check on her. Her medications were carefully monitored and changed as needed to keep her as comfortable as possible. Eventually she needed to go to a residential hospice where her care was absolutely wonderful. Their main concern was to keep her as comfortable, and as peaceful as possible. I have nothing but great things to say about the care she received at the end of her life.
    My Mom is almost 91. She was in assisted living for a number of years, but eventually she developed dementia and her health also became very poor. She is now in a nursing home and receives hospice care from an agency that comes to her in the nursing home. I am very pleased with her hospice care as well.

    Grieving is a very hard path to walk, and I know that you must miss your Momma terribly. I an so very sorry for your loss. I hope that even though your grief is great, you will also find some ways to take care of yourself. You have done your best to be a caregiver to your Momma. Now you must try to give some of that care to yourself. You have definitely earned it.
    Cynthia Louise
     
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  3. Missy's banks

    Missy's banks Member

    I'm trying my hardest. Thank you so much for the kind words. I needed that.
     
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